After longstanding confusions about her identity, Sara Kelly Keenan became the first person in the US to obtain a birth certificate with ‘intersex’ on it.
Photograph: Sam Levin for the Guardian

Sara Kelly Keenan didn’t think a Google search would change her life. But in 2009, at age 48, a few clicks revealed the truth that her parents and doctors had hidden for decades: Keenan is intersex – biologically a mix between male and female.

After meeting someone with a similar condition, Keenan’s online research and a later appointment with an endocrinologist confirmed that she was born genetically male with female genitalia and a mixed reproductive anatomy.

“It never occurred to me that I was going to uncover a 30-year lie,” she said. “It was really shocking to learn that I had been duped about my own body.”

Keenan, 55, has soared to international fame in recent weeks after she became the first person in the US to obtain a birth certificate with “intersex” on it. Activists said it’s a groundbreaking moment in the fight for intersex rights that could help pave the way for public officials, doctors and parents to better recognize and respect a marginalized group.

In a recent interview with her husband at her home in the mountains of Santa Cruz, California, Keenan said she decided to go public with her story in part because she recognizes that misconceptions about intersex people can have life-altering and sometimes fatal consequences.

Intersex – the often ignored “i” in the LGBTQIA acronym – is a general term for a range of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t fit typical definitions of male or female. Campaigns for the rights of transgender people – whose gender identities don’t match the ones assigned to them at birth – have gained significant momentum in recent years. But intersex issues remain widely misunderstood, even in queer and progressive communities.

Growing up, Keenan recalled, her physicians and parents insisted she was “100% girl”, even after she failed to hit puberty and grew much taller than average girls. At age 16, she was advised to start hormone replacement therapy and undergo surgery to remove what doctors told her were ovaries that could become cancerous.

Later in life, she found out that doctors had actually removed what was essentially testicular tissue that could never develop. After her 2009 discovery, Keenan’s father revealed that doctors had told him Keenan had the option of “masculinizing” with hormones and a constructed penis.

When Keenan learned the truth, her longstanding confusions about her identity made sense.

“It was a ‘duh’ moment for me. I’ve always felt as masculine as I do feminine. I can’t really choose a gender,” she said. “The world doesn’t know what gender I am.”

I’ve always felt as masculine as I do feminine. I can’t really choose a gender. The world doesn’t know what gender I am

Sara Kelly Keenan

When she was born in New York City, Keenan’s initial hospital records identified her as male, but her documents were switched to female weeks later – before her parents adopted her from an orphanage.

She said she’ll never know whether she received genital surgery as an infant, but intersex advocates said it’s a common problem rooted in outdated and harmful medical theories. Physicians have long convinced parents to agree to cosmetic procedures that aren’t medically necessary and are designed to “normalize” babies.

“Doctors have taken it upon themselves to literally carve bodies so they fit neatly into male and female body types,” said David Strachan, a 69-year-old San Francisco resident who is intersex. “We’re not stereotypically male or female. There’s a whole spectrum in between.”

Advocates argue that it’s unethical to force a gender assignment on intersex infants, particularly with genital mutilations that can severely impair sexual functioning, and that people should be able to make their own decisions about their bodies and identities when they are older.

One way activists have been fighting back is by pushing governments to formally recognize that they are neither male nor female. After learning of the case of Jamie Shupe – an Oregon transgender person who became the first in the US to successfully petition for a “non-binary” gender classification – Keenan decided to pursue a similar case in California last year.

In September, a judge changed the formal gender of Keenan from female to non-binary. (Not all intersex people identify as non-binary; many identify as male, female or transgender). Keenan, a retired paralegal who now works as a health and wellness coach, used the state court order to seek a change on her birth certificate.

In December, New York City officials mailed her a new certificate with ‘intersex’ written under the ‘sex’ column, which is believed to be the first of its kind in America. Photograph: Sam Levin for the Guardian

In December, New York City officials mailed her a new certificate with “intersex” written under the “sex” column, which is believed to be the first of its kind in America.

At her home, where the couple’s four dogs cuddled by her side, Keenan’s face lit up when she pulled out laminated copies of the documents.

“I just noticed my smile gets a lot bigger when I hold this,” she said.

Her husband, David, chimed in to say it’s been a joy to embrace her identity in recent years.

“She doesn’t feel she’s supposed to be something she’s not,” he said. “There’s a power in knowing who you really are.”

Proper identification can also help people avoid a wide range of discriminatory practices. As is common with trans people, intersex and non-binary people can often struggle with police, airport security, doctors, employers, landlords and others misgendering them or refusing to acknowledge their identities.

“It’s an issue of respect, but it’s also about safety as they move about in the world,” said Toby Adams, legal director of the Intersex and Genderqueer Recognition Project, which is helping people petition to get their documents updated. (Genderqueer is another term for people who don’t identify as male or female.)

The legal successes of Shupe and Keenan have inspired others to ask judges and state officials to recognize their true gender identity and sex.

“We’re trying to exist in this society and be recognized,” said Char Crawford, a 32-year-old San Francisco resident who is trans and non-binary and has petitioned the court for their gender to be recognized on their ID. “I’m doing this personally to live an honest life and to be out and open about who I am.”

Breaking down the stigma of being intersex is critical, advocates said, particularly considering high rates of suicide, possibly linked to coercive treatments.

“There’s nothing about intersex that needs to be shameful or hidden or surgically altered to fit into a gender binary world,” Keenan said. “This is just another way human beings are created.”